I wrote more about this in my Living with Kennedy's Disease blog this morning, but wanted to share a little of it in the forum.
Swallowing and Choking Difficulties?
While checking my Facebook page, I ran across a link to the ALS Association’s ‘ Living with ALS Manuals on the Kennedy’s Disease Team Great Britain page. Since many symptoms with ALS are similar to Kennedy’s Disease, I explored some of the manuals and found some of the information relevant and potentially useful for those of us with SBMA.
The first manual I want to make you aware of is:
Adjusting to Swallowing and Speaking Difficulties
Swallowing, at some point in the progression of Kennedy’s Disease, can become an issue. This ALS manual tackles many of the concerns in an easy to understand manner. Speech issues are not as prevalent in Kennedy’s Disease, but it can be an issue for some of us living with the condition. This manual also discusses communication devices including aids to use computers.
Check out the manuals and see if any of the information provided is relevant for you.
It is, and thanks for posting this information.
I have been off of this site for awhile and just found your note. I was diagnosed with Achalaisa a few years ago. It's rare but I can't help but think it just may have a link to KD. I tried the link on your page but said it was no longer available. I will try to research it. Thanks for this post and God bless your journey!
As Lori commented, the ALS manual link for swallowing and speaking no longer works. The ALS Association has updated their website recently and this is now the correct linK: Adjusting to Swallowing Changes and Nutritional Management in ALS
And, this is the link to view all of the Resource Guides: Living with ALS Resource Guides
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614